Advise re GCA blurry vision

[2013mayo]

Please can anyone give advise. I have GCA/PMR, I am currently reducing pred, 8mg per day plus TCZ once a week. For the last few weeks my eyesight has become very blurry, I have seen my rheumatologist and he now wants me to take mycophenolate mofetil as well, at no point did he suggest I up the pred, I’m worried as my eyesight is getting worse daily.

[DorsetLady PMRGCAuk volunteer]

Have you had an eyesight test recently? Pred can cause blurriness, but would have expected up that at higher dose, but it can also be the cause of steroid induced cataracts,

Cannot comment on TCZ nor mycophenolate mofetil - never been on either...sorry.

[2013mayo in reply to DorsetLady]

Ps, I have been on very high dose pred off and on for the last year and a half.Started tapering some time ago as I am getting so many side effects from pred.

[DorsetLady PMRGCAuk volunteer in reply to 2013mayo]

I know you’ve been on high doses, I also had GCA .....what I meant was I would expected you to have had issue earlier whilst on those doses if it was the Pred causing blurriness.

As you have had eyes tested and ok, then it must be meds, not sure if TCZ causes blurriness.

[2013mayo in reply to DorsetLady]

Yes, every time I got blurry vision the rheumatologist put me back on high dose pred, it corrected my sight straight away, for some unknown reason the last 2 months I’ve been told to stay on low dose pred, I’m almost tempted to up the dose myself.

[DorsetLady PMRGCAuk volunteer in reply to 2013mayo]

I suppose you could try it for a few days - and then drop back down to current dose....and see what happens. But it’s usually high doses that make eyes blurry - and it gets better as you reduce - but you seem to be the opposite- so am a bit flummoxed as to what to suggest.

[2013mayo in reply to DorsetLady]

Thank you for your help, just wish I could get my sight back to normal.

[2013mayo]

Yes I was seen at eye hosp before being referred to rheumatology the same day, eye emergency say my eyes are fine.

[PMRpro Ambassador]

I can only assume that the rheumy is at least aware that TCZ only works 100% for half of patients and wants try the mycophenolate in the hope it works for the other bit that TCZ isn't effective for. I'd have thought he give the mycophenolate a chance to work first.

[Bachblues]

I too have a blurry left eye, not had this before. Now had 3 injections TCZ & was on 15 mgm Pred until Wed. Since dropping to 12.5 in addition to eye I now have temporal headaches - not overwhelming but definitely there on both temples. Understand that TCZ takes 3 months to work. Any thoughts? Someone else started TCZ same time as me but I didn’t take note of their profile. They may also have a perspective on this. Thanks.

[Horsewhisper in reply to Bachblues]

Hi Bachblues, I started TCZ on 22nd Dec and Rheumy said to stay on current dose of 22.5 mg Pred for the first 4 weeks and then to start tapering down 2.5 mg per week. (I’ll see how I go with that tapering plan and may well adjust it slightly, it I feel it’s too much too quickly.) My 4th weekly injection is this coming Tuesday and so far, I’ve started to feel slightly less fatigued, the temporal headache is abating and I feel a little “better” than normal. I do have sore eyes and a sore mouth though. I realise that it is very early days and I m hoping that I will continue to steadily improve. I have not been able to taper below 22.5 mg Pred without a flare up of symptoms so it’ll be interesting to see if I can start reducing the Pred whilst on TCZ. I’ll keep you posted!

[Bachblues in reply to Horsewhisper]

Thank you for this - sounds like I am really tapering too quickly so it is great to have everyone's perpectives. Let us keep eachother posted!

[Horsewhisper in reply to Bachblues]

Yes sure - everyone is different and I’ll be taking the taper steadily so as not to suffer too much from steroid withdrawal and to hopefully avoid a return of GCA symptoms - keep in touch as to your progress, I’ll be interested to hear how you get on!

[Grammy80]

Things are not usually simple....but have you thought that you might have dry eyes? I am a GCA-er, TCZ once a week plus 12mg prednisolone... Xiidra, prescribed by an ophthalmologist, has helped me. Perfection? No, but it has helped. There is also an OTC eye drop I purchase called Artificial Tears because I was told only one drop of Xiidra per day.

A good indicator...though not professional....if you blink, does it seem clearer?

I hope it helps you.

[Bachblues in reply to Grammy80]

Thanks - this is a good idea that I will try.

[2013mayo]

HiYes I do have dry eyes, the eye hosp prescribed hylo forte. Funnily enough I started using it again yesterday and it did improve my sight for a very short time (half an hour), but I will continue with it for a few days.

[PMRpro Ambassador in reply to 2013mayo]

If you have dry eyes then you need to use the stuff ongoing - it is a chronic condition, not one that can be cured with a few days of drops.

[2013mayo in reply to PMRpro]

Thank youI read somewhere that you use eye drops for few days and then just when you need it. I’ve used it today and it’s made difference to blurred vision.

[PMRpro Ambassador in reply to 2013mayo]

It's part of the autoimmune problem - and that will go on as long as the PMR which means you need them for some time to come.

[2013mayo in reply to PMRpro]

Thank youWill use them everyday now 😀

[Grammy80 in reply to PMRpro]

So it is part of the 'process'~? I'm so thankful for the knowledge you share! Just knowing is such a motivator for the consistent treatment of the problem...then we maximize how good we feel. Thanks so much💖💖

[PMRpro Ambassador in reply to Grammy80]

The informed patient is a less worried patient ...